“Go Potty”

We had been potty training when Maggie started going through regression. We hadn’t made it to wearing panties but she was understanding the concept. After we were diagnosed, we kept sitting Maggie on the potty. With everything else happening with Rett Syndrome…we kept asking ourselves. Is it possible to potty train a kid with Rett Syndrome? In general, I don’t know, but for us, for Maggie we would try. For the last year we kept our potty training to just a routine of sitting on the potty, when she woke up, right before we left the house, when we got back home and before bed. Also before and after naps. In reality, we just wanted to have a little normalcy in her development and we had realized with Maggie – she is so strong willed, that we believe she can do anything. It will take her longer to learn it but isn’t that worth it? If she can do it we will push her to get there.

So for the past 2 years, Maggie has been “Going potty”. But in the past few months there was a shift, all of a sudden Maggie was getting really upset, sporadically throughout the day. We realized, she is upset when she pees in her pull up. So we talked with her teachers and decided it was time to fully “time train” Maggie. Every 30-40 minutes she goes to sit on the potty. At first this was daunting, but now if we don’t sit her on the potty in time or she has a random accident, she is really upset. You see, she gets it, she doesn’t want to pee in her pull up, she wants to go potty. It’s an awesome and frustrating feeling because more often than not, Maggie wants to tell us that she needs to potty, but doesn’t have the words.

Obviously, we are using all sorts of communication tools to teach her to communicate to us that she needs to go, such as a picture card or on her eye gaze or on push buttons around the house that are programmed to say “go potty”. We are getting there but it is a lot of work on our part and on her part. Recently a friend of ours started potty training her son, after a few weeks she mentioned he was fully trained. It felt like a punch in the gut because even though I’m glad for them, it really was hard to hear. Here we have been training Maggie for two years to “Go potty” and we are having success, but we aren’t there yet. And In those moments of being reminded where we are not, it is tough. Then I remember, Maggie is doing it, it’s taking us longer, it’s harder but as a family we are doing it. Milestones that are relatively easy for others, for us aren’t, so when we get there, it makes the progress so much better and we celebrate. We relish In our accomplishments because nothing about teaching Maggie to “go potty” is simple, there are so many layers, and strategies, plus setbacks before we reach our goal. But in reality, that is how all of our milestones feel. We are reaching them, but we fight to get there.

I should mention, Maggie wears panties during the day now at school and at home. We were on a good run with a couple of weeks with no accidents…yay! Then she got sick and we have had quite a few setbacks and accidents, but we will get there.